What Makes Me an "Expert"

I am no expert, just a mom who learned a lot about resources out there for parents of preemies and/or children with disabilities. Donavon, our son was born on February 9, 2007 weighing 1 lb and 8oz. He was a micro preemie, a 24 weeker, our tiny miracle. He was transported from Baptist North to "big" Baptist and I didn't get to see him again until February,11. Nothing can prepare a parent who is seeing their preemie for the first time. He was 9 inches long and beet red, his skin was transparent. He had so many tubes and wires coming off of him, and yet the first thing I focused on was just how perfect he was.
He would not stay long at Baptist though, he had obstacle after obstacle that Baptist could not deal with. The Doctor's are wonderful there, they just are not equip for extreme cases.Donavon was born with *brain bleeds, grades 3 and 4 the highest on the scale. This was a pressing issue the days after he was born, but were soon overshadowed by a condition called *NEC (Necrotizing Entercolitis). When Donavon was fed by feeding tube for the first time his intestines were not prepared to digest food and perforated. His abdomen turned black and he was on the brink of kidney failure for 48 hours. He was getting blood and platelets around the clock and many medicines as well. Finally, with prayers from around the state and a wet diaper, he pulled through it. To this day every Doctor that sees him tells us what a blessing it was that he pulled through.
Surgery #1, March 22, 2007: Six weeks after he arrived at Baptist he was transported to Arkansas Children's Hospital. Within hours of his arrival he was in emergency surgery to save his life. Donavon's bowels not only perforated in 1 place but in 3, the surgeon said this was very rare. After 3 long hours of surgery Donavon came out doing great and continued to heal over the next several months.
Surgery #2, April 23, 2007: Donavon had a condition in both eyes called *Retinopathy that needed surgery to ensure vision. This typically takes 30 min. per eye, but Donavon took 1 hr per eye. The surgery was a success, at this time he wears glasses for near sightedness.

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NICU Equipment

I found this sight helpful in better understanding the equipment in the NICU.

http://www.aboutkidshealth.ca/PrematureBabies/NICU-Equipment.aspx?articleID=9429&categoryID=PI-nh1-11a

What Makes Me an Expert Continued...

Sending your baby to surgery never gets easier, as the parent you hold it together and comfort your baby because you have to be their strength. Prayer plays a large role in our lives, it is never far from our minds that we would not have Donavon had the Lord decided it was time to bring him home. Other thing's that gave us piece of mind was knowing he would not remember this when he was older and like most babies, he was so incredibly resilient. Donavon would typically be wide awake and in good spirits in the recovery room following most of his surgeries.
Surgery #3, May 9, 2007: A Ventricular Access Device was placed in Donavon's head due to "water on the brain", *Hydrocephalus. The brain bleeds made his brain unable to drain spinal fluid off of it. His head began to swell and the Doctor's watched it closely. He had a spinal tap as well as the fluid drained directly off of his brain when the Doctor's realized something had to be done quickly. The device allowed Doctor's to drain the fluid off with out being invasive to his brain which would make for an increased chance for infection. This device was a temporary answer, a *shunt would be placed at a later date for a long term solution. This surgery lasted 30 min.
Surgery #4, May 10, 2007: Donavon's intestines appeared to be healthy enough to have them put back in place, they were working well. During this surgery he also had a *G-Tube placed to feed him through for an extended period of time. The surgery went great, the Doctor's were very pleased with the results from the initial surgery, no more bowel had died, it was all in working order. The surgery took 3 hours.

March of Dimes

The March of Dimes is dedicated to finding answers regarding premature births and low weight babies. There is good information for NICU parents throughout the website as well as ways you can get involved with this cause if your interested. http://www.marchofdimes.com/

NICU Terms and Definitions

This is a sight that I found to be helpful when I was looking for definitions on NICU terms.

http://www.ttmf.org/glossary.html

What Makes Me an "Expert" Continued...

Surgery #5, June 27: Shunt placement on the right back side of Donavon's brain. The tubing that pulls the fluid off of the brain is routed through his tummy. This could be risky because of all of the scar tissue in his tummy. The surgery went great and the results were quick to appear. He had a bump on his head where the Ventricular Access Device was placed and it went down fast.

Surgery #6, July 6: The surgeons told us from the beginning that the shunt could malfuncion and it did, very quickly. Donavon had a shunt revision to change out a part in the shunt to ensure the fluid is being pulled off of his brain. It was a success, for now...

HOMECOMING!!!! August 15, 2007 Donavon came home, finally and we could not have been happier. We thought he was going home with us 3 weeks prior to this. There were set backs with his feeding and we had to wait. Better to wait than to get him home just to go back! The 2 night stay in the Multi Purpose Room in the NICU was a challenge. There was no sleep to be had, Donavon had not slept in a different place in nearly 5 months so he was upset. Nurses and Doctor's were in and out of the room at all hours, helping us with the adjustment to home. Once we got home Donavon was even more upset for about 1 month, again he had been anywhere except for bed #28 at ACH for 5 months. It was a change for us all, but once he got settled in to his new routine life was good.

Surgery #7, September 21: The Ventricular Access Device was removed. This was a much needed surgery due to the fact that the device malfunctioned and created a huge goose egg on top of his head. This operation lasted about 2 hours.

Surgery #8, October 17: The last surgery was great for getting the bump off of his head but it caused yet another shunt malfuntion. Donavon had another shunt revision and this time they placed the tubing into the lining of his lungs because there was too much scar tissue in his tummy to support the extra fluid. This surgery was only 1 hour and remains a success.

Surgery #9, January 3, 2008: A circumcision and 4 hernia's were on the agenda for this surgery. Donavon had 2 incisional hernia's and 2 groinal. The groinal are very common in preemies. This surgery was 1 hour.